For patient groups, leaving Facebook isn’t easy: the connections can be valuable

Graphic adapted from TNW (TheNextWeb)

My post January 7 about why I stopped participation on Facebook has drawn lots of discussion, which is great. In this era, it’s increasingly important for us all to THINK about the information that floats past our eyeballs: “Wait – who put this here?? Do I trust it?? What if it’s wrong??”

It’s true for the news feeds that we watch (online or off), as well as everything we see on Facebook and everywhere else on social media. The hard truth is that sometimes what “broadcasters” show us (and make no mistake, Facebook is both a broadcaster and an editor, because it modifies what it shows you based on your past likes) is NOT a random feed of stuff that happened, but something chosen to keep YOUR eyeballs glued to YOUR screen.

I’m not opposed to businesses “monetizing” (getting money out of) something they let us use for free. What I think Facebook and its investors have failed to see is that people in trouble – including medical trouble – are not fair game for “monetizing” the same as if they were shopping for Christmas presents.

I suspect this is because they are precisely the kind of young(ish), self-ish, “medical problems are for other people” ego-hogs who haven’t yet lived long enough to discover that even good, smart, hard-working people can have s4it fly in the window and cause them major problems. They are, I suspect, prey to the arrogant “neo-liberal” view that “People who have problems are inferior. Why else would they have problems??”

In 2018 a lot of people started leaving Facebook in protest over the corruption the company enabled in the Cambridge Analytica scandal. But a lot of people – including the terrific NY Times essay “I can’t jump ship from Facebook yet” – have made the point clearly that there’s real value in how FB makes a very good place to find unknown and perhaps unknowable people who are in the same “ship” as you. (Please read that essay to get a feel for how vital this can be to someone in trouble.)

It won’t be easy to create a “lifeboat” for people to move to, if they’ve had enough with FB. (Lifeboat is the term used by @BraveBosom, breast cancer group admin who first discovered FB had given marketers a tool to sneak into their “closed” group and download the members’ names (!!!).)

How might we start to grow a new “go-to place,” far away from Facebook and free of its marketing skullduggery? It will take time, but I think it’s worth starting. We know there are “super-communities” at Inspire.com and SmartPatients.com, and we know that the Mayo Clinic has the free and confidential Mayo Clinic Connect community. (Read their post about privacy a week after my own announcement.)

I don’t have a conclusion to this post – it’s an ongoing, open question, because patient needs are real (that fact won’t stop) and Facebook continues to have grossly unacceptable scandals. Latest example: did you see the Wall Street Journal news that some health apps take intimate data you enter (or that the apps collect) and send it to Facebook?? “You give apps sensitive personal information. Then they tell Facebook.” Including a women’s health app that sends data about ovulation and menstruation, a cardiac app that sends your heart readings to FB, etc?? (And Realtor.com’s app sends FB info on houses you favorited.)

You know these beasts were aware of how nasty this is because as soon as the WSJ outed them this month, many of them stopped that very weekend.

(If this doesn’t bother you regarding your own data, see how it feels to think about FB and apps doing this with your daughter’s or son’s data, or your mom’s cardiac data, etc. Remember: once a fact has been accessed by some marketer (or other “business partner”), it’s out of your control forever. The book Zucked makes this very clear, repeatedly.

I don’t see any way to escape concluding that we need a SAFE place to meet and discuss. That won’t change things this week or this month, but I think we need to tell each other that Facebook’s not safe, and start looking for a “lifeboat” we can trust.

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Thanks Dave, for the hat tip to Mayo Clinic Connect connect.mayoclinic.org. The Connect community, while hosted by Mayo Clinic is for all; Mayo and non-Mayo patients/caregivers. It is a public forum, funded solely by Mayo Clinic and the information posted by patients and caregivers on Connect is not shared or sold to third parties or used to generate funding. Members do not have to use their real name; a screen name like @hopeful is okay.

If you are currently an admin or a member of a Facebook group looking for a new home, feel free to reach out to me @colleen_young or @leeaase. We’d be happy to discuss if and how your group and members might find a safe port on Connect. (Just had to stick with the nautical metaphor.)

I know some people worry about a forum that doesn’t require real names, because of scammers and scandals. I know Mayo Connect handles this by having a vigorous community of trained moderators (unlike Facebook’s mob of minimum-wage moderators in call centers). I don’t recall the link to your page that describes the moderator function – please re-post it?

Dave, I posted the link to this blog on a couple of my FB health-related, “closed” groups. One admin responded that your site, here, collects cookies and other info on people who come here. I tried to reassure her that I know you and you’re not engaging in the same practices that FB has been doing, but I don’t know how to do that effectively.

First, thanks to the admin for being vigilant enough to bring this up! FWIW, I have no clue what data those cookies involve – this is a plain old WordPress website, and evidently the built-in software does things I don’t know about.

But nobody should take that for an answer from a stranger. If anyone has any idea how I can stop my site from doing that, I’ll be grateful!

Also, is the admin talking about the site’s standard “This site uses cookies” notice, or something else?

I love seeing people being wised-up enough to have this kind of conversation!

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[…] gross misbehavior with our intimate health data, by FB and its “business partners,” was in my Feb 28 post about why some patient groups can’t yet leave FB, and bears repeating. Note, this is about […]